almost 6 year old ... celiac
lin7604
Posts: 2,951 Member
my son will be 6 in oct. last dec he has a bout of tummy aches on and off for a 1.5-2 week period. So i took him to the dr and she has blood work done. It came back positive. so friday he will be going for a biopsy. he has a few tummy aches in Aug and that has been it since dec. I am not sure the real difference between a gluten sensitivity, being intolerant or full blown celiac. just trying to per prepare myself.
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Coeliac (English spelling) is an auto immune disorder - its when gluten causes the gut to attack itself and destroy (flatten) the micro villi in the intestine. The micro villi are needed to help absorb nutrients and this is usually what causes most of the symptoms though it is very common to have no or little symptoms.
There are lots of gluten free foods now available in the supermarkets and it is easier shop as food labelling is much better.0 -
so basically whether you are just sensitive or have celiac.. the result is the same. you have to go gluten free, correct?0
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Yes, absolutely. If his bloodwork is showing antibodies, he should be avoiding gluten.
A friend of mine has a son whose bloodwork was positive, and his biopsy was negative, and the doctor told them to just keep feeding him gluten, and to bring him back in a few years to see if he has any gut damage yet. This is the *wrong* advice!0 -
I have it and when my baby stated eating baby (20m) food and had a hard time the did blood work. after it came back + that is all they are going to do on her. till she is a lot older just told to keep her on a gluten free diet.0
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Yes, absolutely. If his bloodwork is showing antibodies, he should be avoiding gluten.
A friend of mine has a son whose bloodwork was positive, and his biopsy was negative, and the doctor told them to just keep feeding him gluten, and to bring him back in a few years to see if he has any gut damage yet. This is the *wrong* advice!
but why is it wrong if it could be something else? that is why they wanted to do a biospy so bad on him as everything else else is normal for him except he blood work, which could mean something else... so this way the results will speak for itself, right.... if it came back positive i would monitor any difference is him after and keep it all on a record and then i may get him tested at a later date as well just to make sure.0 -
the reason they usually want to do the biopsy after a positive test is to check to see how bad the damage is. If you test positive you have coeliacs as they are testing for a specific antibody. it like if they test you for measles and its positive - it can only be measles.
Any damage to the gut is reversible if a gluten free diet is followed and does heal but can take a while. It can also take a while for the body to catch up with all the nutrients and taking a good multivitamin and mineral supplement is a good idea.
What to remember with coeliac disease is that the damage caused by eating gluten leads to the body not absorbing the right nutrients and this is the long term causes some serious illness such as arthritis, skin disorders and even depression.
Also many people can have silent coeliac so its not possible to see symptom especially at first but the damage is still being done. If someone is tested positive the only choice is a gluten free diet.
Dont want to scare you but the long term damage ( if someone continues to eat gluten) can lead to bowel cancer0 -
thanks for that info, that is what the dr aid too... just didn't know if the blood work could show it as a allergy or only as the disease...0
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The only reason they will kep him on gluten is for the biopsy. As soon as its done it straight onto a gluten free diet. In our area they offer a yearly biopsy to check that the gut is fine but my doctor just does a yearly blood test to check all my vitamins etc are normal.0
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oh i knew that is why they wanted him to stay on his normal diet. i just didn't know if the blood work could show a allergy or just the disease...0
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Some doctors will insist that it is only celiac disease if there are flattened villi in the biopsy. They would consider antibodies in the blood but no villi damage to be "non celiac gluten intolerance".
Other doctors believe that flattened villi are just one possible symptom on the spectrum of celiac disease, and that it may be present or absent.
In either case, the doctor should not tell you to continue eating gluten. If your body is producing antibodies because of gluten, then your body is being damaged by gluten. Period. Even if you don't have any digestive symptoms. Even if you don't have flattened villi. Don't accept that you should continue to eat gluten until there are holes in your digestive tract, you can't walk from gluten ataxia, you have DH, arthritis, diabetes, hashimotos disease, etc. Don't "wait and see" how much damage it can do before the doctors can actually see it.oh i knew that is why they wanted him to stay on his normal diet. i just didn't know if the blood work could show a allergy or just the disease...0 -
so i guess it really doesn't matter what his blood work showed even if it was 1 number over the normal, it is positive, correct? do you know what normal numbers are, this way on friday i can ask what his numbers were n his blood work , just to know. so much to learn... wow0
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The blood test is basically like a pregnancy test - you are either pregnant or not. You cant have slight coeliac disease although you may have no symptoms. Hope the test goes well for little man and there are plenty of alternatives out there.. My son eats lots of the g/f stuff as he is not allowed dairy and we buy him treat that are from the free from range which are usually both.0
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thx.i guess i keep getting a allergy mixed up with actual celiacs. i have read so many can have a wheat allergy and can still eat little bits here and there and then i hear celicas and you can't have any. I didn't know if a wheat allergy woudl show up in the blood work or just celiacs? i hope the test goes smooth too and will be interesting on what they find out. i just find it strange that so many can have NO symptoms at all, who woudl know to test for it then and help yourself heal itself up if you have no clue......0
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An allergic response produces histamines.
Celiac/gluten intolerance produces antibodies.
Someone with a mild allergy can sometimes tolerate small amounts of an item, or one form (cooked) over another (raw), or only a certain variety (spelt, but not modern wheat; goat's milk but not cow's milk,) etc.
People diagnosed with non-celiac gluten intolerance are often told that it is okay for them to have small amounts of gluten, as long as it doesn't make them feel sick. I happen to disagree.0 -
You have to have a Rast test to or a prick test to determine sensitivity to wheat. I'm not sure if the blood tests now test for foods. I know when I took them the blood test was mainly to look at sensitivity to environmental issues and they did the food in another manner.
I would call the doctor and ask him if it matters if you take him off gluten for now. Call the doc and double check - than you'll feel more confident and less confused. I did read a few articles that claim you can hurt the biopsy by going off gluten early. If the test is weeks away, I would try to schedule it sooner.0 -
the test is tomorrow! so i will wait till after i get the results before i do anything. he really has no symptoms and i know that it can be the silent form i guess but i want to wait till the results are in.0
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Biopsies can come back negative even if you have celiacs disease as the damage can be patchy. A good book to get that explains everything well is "The Complete Gluten-free Nutrition and Diet Guide". Also your blood work can be negative and the biopsy positive. I know it is alot of information to absorb. I was diagnosed 8 weeks ago with celiacs and my 2 youngest boys a couple weeks after that. My younger boys are 4 and 13 months. It has been a big change but we are working on it.0
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so then how do you know what to believe and what the "REAL" results are???? if you are or not?0
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If a test (blood or biopsy) is positive, it is positive. If it is negative, it could be a false negative.
Although you don't see any symptoms in him right now (though I question why you got the tests done if there were no symptoms), there may be a lot of things going on that you aren't seeing, or aren't connecting with celiac disease.
For example, my son got strep throat repeatedly, mere weeks apart. But once he was off of gluten and dairy, he's never gotten strep throat again (about 4 years now). Did celiac disease cause his strep throat? Certainly not, it is caused by a bacterial infection. But his immune system was so compromised trying to fight off gluten, that there were no resources left to fight a bacterial infection, or cold or flu viruses, etc.
I grew up with chronic nosebleeds. Bled all the time. Sometimes several times a day. No one could ever say why. I just got it from my dad. Guess what? Chronic nosebleeds are a symptom of celiac disease (which I also got from my dad).
Anxiety, behavioural problems, or hyperactivity can be caused by celiac disease. Poor sleep. Infertility.
What you really have to do, after your testing is done, is take him completely off of gluten. Not just for a day, but for several months. Keep a journal and observe changes that you see in his health and behaviour. If he has a gluten infraction, record any negative effects. Chances are you will see a number of positive results that you hadn't expected or ever connected to celiac disease. And you may be surprised at his reactions to accidental infractions or cross contamination once he has been clean of gluten for a while.0 -
ok, i had been told by our dr that you can a false positive, especially when they are young and that is why she wanted the biopsy done to see if there was anything really happening. The blood tests were done as he was getting headaches daily and no one knew why. so they did a whole round of tests. that was last dec, nothing since? it's so hard if one has the silent form, as how is one to know that there is a problem if there is NO symptoms.... as they say that one parent has to be positive for him to be positive... so since we have NO symptoms, no one would of ever thought to get tested....
i have heard behaviors will change going gluten free, so that would be nice if that was the case with him.. even if no other change is seen. oh and he is a poor sleeper... always has been. very sensitive to getting over tired and then he is sleep is effected more so. so i always had to have him on a strict schedule.0 -
My dad's and grandma's main symptoms were migraines. I hope gluten free helps him!0
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Well the surgery went well, they took 7 samples. i should know in 4 weeks what the results are.0
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Yes, absolutely. If his bloodwork is showing antibodies, he should be avoiding gluten.
A friend of mine has a son whose bloodwork was positive, and his biopsy was negative, and the doctor told them to just keep feeding him gluten, and to bring him back in a few years to see if he has any gut damage yet. This is the *wrong* advice!
:noway: that's just crazy. Why risk it? By the time you have the gut damage, you already will have health problems, maybe vitamin deficiencies. I had anemia and low B12 at diagnosis. I was always tired, overweight and irritable. It increases your risk of lymphoma if you are coeliac and carry on eating gluten as well.
Many doctors here in the UK tend to think that a gluten free diet is a bad thing, and that nobody should ever cut out gluten if they are not coeliac. My GI specialist said to me that he didn't understand why anyone would want to cut a perfectly healthy food out of their diet if they didn't have the disease itself, when I told him that no matter what the biopsy said I would go gluten free anyway, and he said it was just a "fad" and young women misguidedly think gluten free will help them lose weight! Non-coeliac gluten intolerance is generally completely denied, and people who say they are intolerant to gluten usually treated as cranks or hypochondriacs by their GP's and specialists, despite growing evidence of links between gluten intolerance and conditions like Crohns, ulcerative colitis, IBS, allergies.....
Coeliac disease is not always inherited from a parent, so it is incorrect to say you must have a coeliac parent to be coeliac yourself. Neither of my parents are coeliac. My second cousin is also coeliac and so are here two kids and neither of us have parents with the disease - when we came back positive, our parents all got tests and theirs were all negative. None of them avoid gluten so no chance of false negative.0 -
And to me, 10 years after being diagnosed, how many DOCTORS do NOT know what they are talking about.0
